7 ms·

I remember at least three instances in my country where the authorities were forced to allow people to use experimental treatments due to media clamor. In all

• nextos 3y ago
  Immunotherapies are still immature but far from snake oil at this stage. They routinely achieve miraculous remissions but also lead to many adverse events. For most late stage tumors, chemotherapy will only, at best, increase life expectancy a bit. In my opinion, the choice is obvious.
  • deleted 3y ago
    [deleted]
  • Retric 3y ago
    Imminotherapies very quickly kill a significant percentage of the people who try them. So it’s a complicated balancing act when someone is likely to die in say 1-2 years but also likely to survive another 6 months. For people who are likely to die very soon the case is more clear cut, but the people developing these treatments don’t have the resources or infrastructure to try and treat more than a tiny handful of people. Allowing people to pay for such treatments also opens the door for a huge range of bad actors which also costs lives. I am not saying the current system is great, just that there’s a lot more complexity than is obvious on the surface.
    • eilertokyo 3y ago
      Your comment makes something that happens quite rarely (1-5% based on agent, and not quickly) seem like it happens quite frequently.
      • Retric 3y ago
        Some of these trials had double digit percentage deaths within 30 days.
        • adamredwoods 3y ago
          Because the trials sometimes take on people with very little time left.
          • Retric 3y ago
            That’s the estimate for number of people killed by the treatment not the number of people who died in total. You should be careful not to exclude trials cancelled early when considering how risky trials are.
        • eilertokyo 3y ago
          Please provide some examples if you can! I could use the references
  • adamredwoods 3y ago
    Keytruda, and other PD-1 blockers, have good science behind it. Many oncologists believe this is the true path to defeating many cancers. While PD-1 blockers may cause the immune system to attack another part of a patient's body, we have quite a few ways to treat those autoimmune issues.
  • dakial1 3y ago
    I have a good friend who went through Immunotherapy on a Stage 4 lung cancer and had an impressive recovery (all the metastasis tumours disappeared in the scan pictures I've seen). Not cured of course, but has a much longer life expectancy. So I've seen at least one anecdotal evidence that they work.
• nine_k 3y ago
  I'd say that people should be allowed to try whatever treatments they agree to have, in order to save their lives, and also in other cases. One cannot say with a straight face that a woman has sovereignty over her body and thus contraception and abortions should not be banned, and preclude that same woman from getting a treatment that can possibly save her life but has not been approved yet.
  • yladiz 3y ago
    C’mon, it’s extremely disingenuous to compare abortion and contraception with untested treatment.
    • toomuchtodo 3y ago
      Assisted suicide and euthanasia are better examples. If you have autonomy to die, you should have autonomy to die trying not to.
      • jfk13 3y ago
        Well, those are pretty controversial topics, so I'm not sure how much the analogy helps.
        • nine_k 3y ago
          It helps underline the hypocrisy of the current moral norms.
    • junofan 3y ago
      It’s unfair to call treatments untested. Medications are tested extensively. The FDA could work with sponsors to come up with a range of risk profiles and expand access.
      • ejstronge 3y ago
        > The FDA could work with sponsors to come up with a range of risk profiles and expand access. They indeed do this and have various avenues for treatments to be approved on expedited timelines.
• dannyobrien 3y ago
  Maybe the fact that these are the ones you remember is an indication of the problem, rather than evidence that it is wrong.
• valine 3y ago
  Just because a treatment doesn’t work doesn’t make it snake oil. Snake oil implies intent to deceive. Untested drugs can be based on a strong theoretical foundation and still not work. I expect the majority of experimental treatments won’t work. We should be trying regardless, not just for the sake of the people taking the treatment, but for the countless people in the future who can benefit from the same treatment when it does works. Also we should stop patronizing everyone. If someone understands the risk and their doctor agrees, just treat them.
  • jfk13 3y ago
    And how do we assess whether "someone understands the risk"? Often, I suspect nobody really "understands" the risk of some minimally-tested, experimental treatment.
    • MostlyStable 3y ago
      This is a fully generalized argument against personal autonomy.
      • jfk13 3y ago
        Yes, I suppose it could be taken that way. I wasn't intending to argue one way or the other, merely to point out that such an apparently simple condition ("if someone understands...") actually encompasses a huge amount of uncertainty, and so doesn't necessarily represent the "easy answer" that it might at first appear.
      • RandomLensman 3y ago
        Which why in a lot of instances in our lives we are not allowed full personal autonomy. We try to minimize collateral damage as well as self-damage to some extent.
• eggy 3y ago
  Do you have the citations for the three instances where "people died that might have lived otherwise."? In this person's case, he will not live otherwise, so he has nothing to lose by trying an experimental therapy, although it appears to be too late anyway. Very sad.
• netsharc 3y ago
  Couldn't this be solved by getting doctors' opinions? If docs says "This person's only chance of survival at the moment is chemotherapy, and it has a good chance of saving their life.", then, refuse the experimental treatment. But if the docs say "With our current medical knowledge, this person is destined to die within $TIMEFRAME.", then, if the patient consents to try anything, even if it kills them earlier, why not?
• exmadscientist 3y ago
  To sibling commenters: immunotherapies aren't the only problem. There are a ton of truly evil companies out there pushing therapies that do not work, have never worked, and will never work, because they literally have no possible mechanism to ever do anything. This is a crime, but it's very very hard to prove. And these companies get very good at gaming the system, because that is their product. They are mechanisms to commit fraud, stealing all their patients' money and all their families' hope. This is a very bad thing. And, no, I am not making any of this up, but I dare not name names here. These companies also tend to be litigious! The impact of this is extremely severe. First, people die because they choose a truly worthless treatment that can never work, over bad ones that at least had a snowball's chance. Second, people lose faith in The System, because they think that the fraudulent treatments should have worked, so they lose faith in the good ones too. And third, R&D efforts can get redirected away: rare condition X already has a treatment, so let's put our efforts elsewhere (oh wait, no it doesn't, that was fraud, now there will never be a treatment). We will not untangle the experimental treatments issue until we confront this problem. Just do not think that it is all in "good faith" here, or even "best effort": there is real fraud going on, committed by monsters that know exactly what they are doing to take their profit.
  • civilitty 3y ago
    > First, people die because they choose a truly worthless treatment that can never work, over bad ones that at least had a snowball's chance. Like Steve Jobs. Fruit juice kills people.
    • inconceivable 3y ago
      clarification: fruit juice is basically pure fructose which cancer loves and your organs can't handle. actual fruit has fiber and you're unlikely to eat enough to cause harm.
      • civilitty 3y ago
        woosh Steve Jobs got into alternative medicine to treat his pancreatic cancer, including trying a fruitarian diet. Since he had a rare form that isn’t as fatal as pancreatic cancer usually is, there’s a chance he could have survived significantly longer if he had instead treated it with traditional, non-experimental medicine.
• dionidium 3y ago
  > It's easy to say "people who have no other options should get access to experimental treatments" but the problem is that people who have other options want those too, because nobody wants to go through chemotherapy or whatever. I reserve for myself the right to try to save my own life, even if that means some people who can't handle that responsibility make things worse for themselves. I can't get from, "but other people might hurt themselves" to "therefore you simply have to die, sorry." No, I think we just have to be straightforward about this; I don't want anybody to purchase snake oil, but that possibility does not move me to eliminate options for myself or my family.
  • lucianbr 3y ago
    You say this now, but after your son, sister or mother dies after choosing snake oil, you will likely not say "I accept that they chose wrong and that's all there is to it". You will cry bloody murder and blame the system that didn't protect them from the snake oil salesmen, and demand that something be done. Well, I of course don't know what you personally would do. But some people would do this, and it turns out, actually a lot of the people in that situation would do that. And so something gets done. This is the same thing as crypto, people "reserving the right to take risks with their own money", and after the money is lost asking why the government didn't protect them. And the same as many other things. Humans suck at accepting the consequences of their own choices. Nobody has a fetish of taking your choice away from you. People ask for things to be this way, because people are just human.
    • MostlyStable 3y ago
      I agree with your description of reality. That doesn't mean that we have to accept it or say it's ok. It may be politically infeasible for the suggested policy (allowing people to choose treatments even if some people _will_ choose unwisely), or, if enacted, it may be impossible to keep it. But I will continue to advocate for it anyways. I believe in and advocate for _many_ policies that I have close to zero hope will ever be enacted.
      • lucianbr 3y ago
• justinclift 3y ago
  > In all three instances, the result was that the treatments were snake oil and people died that might have lived otherwise. It seems like you're claiming that people who were given medical treatment after media attention weren't down to their last option(s)? If they were down to their last options, then they made their choice and it didn't work out.
• mcherm 3y ago
  That is an interesting and relevant point, but it does not apply in case of Jake and others like him -- he has no alternative where he might live. In my opinion, the FDA ought to be more open to allowing experiments in cases where it is clear the patient is aware of the untested nature of the treatment. It would result in tragic cases like the three you describe. During COVID-19 it would have resulted in people taking Ivermectin which was ineffective and even harmful. But during COVID-19 it would also have resulted in determining 6 or more months earlier that the vaccines we made were safe and effective and the number of lives saved in that single instance would have greatly outnumbered the losses from 100 years of experiments.
• emodendroket 3y ago
  Yes, and the FDA often does get pressured into approving treatments of dubious efficacy: https://arstechnica.com/science/2021/06/a-disgraceful-decision-researchers-blast-fda-for-approving-alzheimers-drug/ https://arstechnica.com/science/2021/06/a-disgraceful-decisi... It's easy to understand the logic of desperate patients who will try anything but it doesn't seem right to allow manufacturers to profit hand over fist selling treatments that may not even do anything, or worse, outright cause harm.
• Waterluvian 3y ago
  I guess the FDA has a role in minimizing the market for snake oil.
• moralestapia 3y ago
  >but the problem is that people who have other options want those too So, why can't one go through its own choice of treatment? Disregarding if its a good choice or a bad one.